Meet the Sanborn Family

The Sanborn Family.

The Sanborn Family.

When our daughter, Olivia, was born with Pfeiffer Syndrome in 2002, we were like most parents who are told the news that their child has “special needs.” Our heads began to swirl as we were thrown into a world of medical terminology that was extremely foreign to us. Because this craniofacial syndrome is so rare, the folks at the hospital didn’t have much current information to give us. We were left not knowing where to turn.

In the blur of those first few months, one of the things that is clear in my memory is a visit from a very sweet lady from Parent to Parent of Vermont who listened as we talked about our challenges and needs. She helped us with those needs, but what I remember most is how she made us feel. Through that experience, we began the relationship we now have with Vermont Family Network (VFN).

We were matched with other families whose children had a similar diagnosis and, as our daughter began to grow and develop, we received services from the Family, Infant, and Toddler Program (now called CIS-EI). Our whole family has fond memories of the developmental educator who provided us with support and encouragement and helped us realize the great potential that our daughter had.

Over the years we have had the opportunity to work with VFN in many capacities. The Medical Education Project, VT-ILEHP and St. Michael’s Program gave us opportunities to work with medical and education students in our home and to share our belief that family-centered care is extremely important. When Olivia began school, we utilized other ways that VFN helps families with health, educational and technology support.

One of our family’s priorities is that both of our children be given the special attention they need as individuals; all children have “special needs” in one way or another. Our older daughter, Amelia, participates in Sibshops which give her the chance to share her thoughts and be with other children whose siblings have special needs. Through these programs and others we have been empowered and feel that our thoughts, experiences, and ideas really do matter. Because of this, we started a very successful listserv support group connecting families from all over the world.

Olivia has endured 13 surgeries to date. More surgeries and other challenges lie ahead for her and our family, but we are grateful that she is a happy, healthy, and confident seven year old. Much of the abundant life she currently enjoys traces back directly to the support and encouragement that we have received from Vermont Family Network.

I thought it would be wonderful to assist other families as we have been supported. Things have come full circle; since February, I have been the Intake & Referral Specialist at VFN. I look forward to being your first contact when you call the office.

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